Some more advice please

[Whymelord]

Hello everyone firstly I want to thank those who replied to my last input,sorry for not replying to all of you I'm really not in a great place right now,I'm am experiencing really bad anxiety attacks, I'm sure I don't need to explain the horrible symptoms of this to you.my husband took me to my gp yesterday, got an emergency app.Anyway the gp was really attentive and supportive, I'm behaving really out of character ,full of fear dread and panic ,it's a condition I would not wish on anyone. As the Pregablin never helped me and was being weaned off them,I had upped my cocodamol by 2 extra,this helped with my RLS but not for long.the gp gave me Diazepam2mg. Plus Zimovane 7.5mg.last night was my first night to take these meds,I did sleep but I was very aware of my legs being restless.can you please tell me if these meds are suitable or should I ask for a different sleeping tab.thankyou all so very much.PS.im tempted to take Ropinirole just to get me through this nightmare,I'm very aware of augmentation but maybe for a short time until I hopefully feel my self again🙏

[Bumble34]

I`m sorry to hear of you obvious distress, I experienced the situation you describe when coming off of Pregabalin, rectified by slowing down the withdrawal even more slowly and using Diazepam to help me through the worst times, it`s now 60 days since my last very low dose of Pregabalin, and three weeks or so since needing Diazepam, and feeling much more stable as I hope you will soon, and yes I totally understand the Ropinarole dilemma which I have and will use very very sparingly.

[Whymelord in reply to Bumble34]

Thankyou soo much for your reassuring help.ive only stopped the 25mg Pregablin last week but I realise I stopped too soon.i will keep taking Diazepam for as long as is needed.its such a viscous circle with really no definite cure for RLS.

[Jelbea in reply to Whymelord]

Hi Whymelord - I am so sorry to hear of your ongoing trauma and glad that your GP seemed attentive. I would be very cautious of taking Diazepam except on an "as needed" basis. I was in hospital a couple of years ago and the consultant insisted that I take Diazepam regularly each day. It was a very small dose which he said would not be addictive but within three weeks I was hooked. Be careful about this drug - you could take it when you really feel the need to help get you through. It is tempting to use it as there is no doubt it steadies you down. Good Wishes

[Whymelord in reply to Jelbea]

Hi Jelbea,thankyou for replying, I have been feeling this severe anxiety now this Wednesday, never felt soo bad ,Joolsg advised me to contact Professor Walker as I believe you had already advised me.im seeing my gp again this Wednesday and will talk to her about RLS meds other than the usual ones they prescribe hopefully take it from there,do you mind telling me if you got help from the Professor.

[Jelbea in reply to Whymelord]

Hi Whymelord. I made a telephone appointment with Professor Walker and he was really great. He spent over an hour talking to me and getting all the information necessary. At the time I was already on buprenorphine patches but they were not lasting well and I wanted transferred to sublingual tablets. My GPs would not agree to this at all but when they received the report from Professor Walker they grudgingly agreed to prescribe the sublingual version. I had some ups and downs and at one stage I had contacted Professor Walker again. He phoned me and discussed changing the dosage and that evening he phoned again to see how I was coping. I could not have asked for more.

However, I believe it is quite hard to get an appointment now but that should not deter you. That is the best that is offering for you as far as I can see. Do not delay in contacting him. I sent him a complete history of my case and tried to include everything which might help.

I really do believe your anxiety is making everything worse for you and as I have suffered severe anxiety I know what I am talking about. I was referred to Care of the Elderly and had CBT with a lovely lady once a week. It took time but was very beneficial. I wish you all the best and hope you make progress soon in getting an appointment.

[Whymelord in reply to Bumble34]

Thankyou Bumble34,I do believe that I did stop Pregabalin too quickly,I don't believe I have ever felt this severe anxiety in my life,I would have had some panic attacks but they would have went away within an hour or so.This overwhelming, irrational fear and dread is unbearable, began on Wednesday night just out of the blue and hasn't eased,gp said its a combination of stopping Pregabalin too quickly plus I was prescribed a different BP tab only last week,the fear of everything that I feel right now is awful,hopefully I will feel better tomorrow and try what you suggest 🙏

[Joolsg]

I'm sorry to hear this. Diazepam will help short term until the pregabalin withdrawal settles.Did you follow Jelbea's advice and contact Professor Walker?

It seems like your RLS is still uncontrolled and you will need medications, but NOT Ropinirole or Pramipexole as you'll quickly end up in severe augmentation again.

You probably need a low dose opioid like Oxycontin or a long lasting opioid like Buprenorphine that Jelbea and I are taking.

[Whymelord in reply to Joolsg]

Thankyou Joolsg,last night I took 1 Zimovane 7.5mg.legs went crazy,I was soo tired because of the sleeping tab.but walked the house all night.No I haven't contacted Professor Walker but Please God this dreadful anxiety will go soon and then I can think straight.

[Joolsg in reply to Whymelord]

Anxiety and panic attacks will lessen as the pregabalin withdrawal symptoms settle.As your doctors won't prescribe iron infusions and the low dose opioids, the only option left to you is seeing Prof. Walker.

Contact him now by email marked urgent.

[Fingerandus]

HI TO ALL i will just tell you that i had this panicky feeling when stopping pregabalin i cannot take it at all ...i took tamazepam but that makes my legs jump and i get bursitis so i take cocodamol which is quite hard to get from my doc i have to go every month no repeats and she just gives me 20 pills so i cant take one every nite i still take 3/4 of my sifrol havent been able to drop down to half yet, it does cause restless legs for awhile after i take it but i get restless legs body arms if i dont, so im stuck between a rock and a hard place i do hope you can find some peace soon tho if its like mine i doubt it

[SueJohnson]

Zimovane is fine but I wouldn't take both at the same time and I would prefer it to Diazepam.

[Dotmowatee]

Diazepam made my legs worse, oxycontin works very well for me at a low dose.

[Ronniebongo]

Hi .. I’m trying all herbal routes instead of prescription meds.. yesterday I went to Holland and Barrett and bought Valerian herbal sleeping tablets ..my legs both started at 7.30pm so I walked the dog then I took two tablets half hour before bed and only got up once in the night , no restless Legs until 4am ! I had a drink and slept again until 7.45.. best sleep in months , I’d had advice on here that valerian was suitable to not aggravate rls and it didn’t , I may take one tablet tonight as I feel like I could sleep for a week.. pleasantly surprised as nothing else has worked so far .. 🙏

[Amelanchier in reply to Ronniebongo]

That’s interesting Ronnie, I am trying to avoid prescription meds too but I seem to remember I tried all the herbal sleeping aids years ago (nytol, valerian and some others but got no relief at all. I may try valerian again then . Nothing ventured………etc etc. 😄 Do hope your success with it continues , let us know …..

[SueJohnson in reply to Ronniebongo]

That's great ! So pleased for you.

[Ronniebongo in reply to SueJohnson]

Not so good last night but it was very hot and as I was in work I only took one tablet and I also got a headache that got worse so I had to take a sumatriptan, I will try again taking two tablets tonight and thankfully it’s cooler already and I’ll be at home too .. I still got abit more sleep with some relief .. all trial and error .. again 🥴

[Ronniebongo]

Apparently nytol has the same ingredients as piriton that irritates rls , the “Valerian plus” knocked me out 😵‍💫could of been a fluke as I had not much sleep the night before but try again tonight and I will let you know 🙏

[discgolfrules]

Ouch, I am so sorry. I have experienced it. Any kind of sedative or anything ending in ...pam, terrifies me. Those meds make my legs so much more painful, also making it difficult to get up and walk. Like being forced to lay there while someone cranks up the dial to maximum voltage, dreadful, horribly, terrible discomfort on many levels with those meds. I also know that wen reducing my dopamine agonist I also experienced very similar feelings of anxiety, fear and distressful situations. It went away after staying at the same milligram for a couple of weeks. Music, sitting outdoors with headphones and rhythmic breathing I found to be very helpful during those moments of possibly having an unknowingly knowing that something may or may not be ok exactly.